Jo Williams and Andrew Holman debate the achievements of Valuing People policies and the kinds of changes that should be introduced in this year’s policy “Refresh”
Dame Jo Williams, DBE, Mencap chief executive
Nothing About Us, Without Us was a report the government commissioned from the Service Users Advisory Group to accompany the Valuing People white paper in 2001. It spells out what have proved to be the white paper’s major successes. By giving people with a learning disability a public platform for the first time, they have been able to play a direct part in government policy and be at the centre of service planning and delivery. Such platforms, provided by the Learning Disability Taskforce and the National Forum for Learning Difficulties, have also given us positive role models, such as Nicola Smith, co-national director for learning disabilities and co-chair of the taskforce.
New ideas generated from Valuing People have led to initiatives that empower people with a learning disability. In Control, for example, came from the North West Taskforce. At Mencap, we are proud to be involved with this ground-breaking project. It has potential to make huge differences to people with a learning disability by giving them more control over their lives.
Most long-stay hospitals have now closed and August’s announcement of £175m to move the remaining NHS campus residents into the community was welcome news. This funding provides the incentive for primary care trusts, in conjunction with local authorities, to prepare closure plans, so people with a learning disability can live their lives the way they want, in the community.
Mencap strongly supports Valuing People’s commitment to the key principles of rights, independence, choice and inclusion at the heart of all learning disability policy. But we are concerned that Valuing People has not achieved all that it promised. Although its statements of aspirations are very good, the implementation has been generally poor and evidence of the lack of sufficient investment six years ago is now evident.
Still only one in 10 people with a learning disability are in employment. Being employed is central to the aspirations of most people with a learning disability and an effective way to be included in society. College courses continue to be cut, with 3,000 course places for people with a learning disability stopped since 2005. The modernisation of day services has given many people the opportunity to do what they want to do. But some have seen services closed with inadequate alternatives or lost entirely due to stringent eligibility criteria.
During the past 12 months we have also seen the horrific cases of institutional abuse uncovered in Cornwall and Sutton and Merton, which further highlights the need for the closure of NHS campuses. While fewer people are now in residential care, and more are being supported to live in ordinary houses, many still have insufficient choice about where they live. The lack of adequate support packages for some people who live independently can have devastating circumstances, as has been seen with the recent cases of abuse and murder of both Steven Hoskin and Raymond Atherton.
Mencap’s report earlier this year, Death by Indifference, found evidence of institutional discrimination against people with a learning disability in the NHS, leading to unnecessary deaths. Yet we have seen no real progress in England on annual health checks, no confidential inquiry into mortality among people with a learning disability, and little progress on health action plans.
Such situations led Mencap, along with nine other organisations, to form the Learning Disability Coalition. This provides a united voice to pressure the government to provide enough public money so that people with a learning disability have the same choices and chances as everyone else.
At Mencap, we welcome the government’s decision to review Valuing People policies. While we should celebrate its achievements so far, its fundamental weaknesses need to be recognised and addressed. Learning disabilities partnership boards need to be stronger and have their profile raised. Mencap has found that people with profound and multiple learning disabilities are still the most marginalised in society.
With the forthcoming comprehensive spending review, the Learning Disability Coalition is calling for £340m to fund services for adults with a learning disability. This would match the amount recently ring-fenced for children with a disability and would go towards the growing demand for adult services. It is estimated there will be a 14% increase in people with a learning disability between 2001 and 2021.
People with a learning disability have the same aspirations and dreams as everyone else and we must continue to call on the government to make these dreams a reality.
Andrew Holman, Inspired Services (advocacy group)
One good thing about having Ivan Lewis as care services minister is that he knows about support services for people with learning disabilities and can see that Valuing People needs a kick up the backside.
Over the past six years it has delivered immeasurable improvements to some – but too few – people. Unfortunately, many of those who have been left with inadequate services are also without a voice.
As a policy Valuing People still has life left in it. But it never properly recognised people with profound and multiple disabilities, people from an ethnic minority, those with autism or carers or parents with a learning disability. I am not sure that the Valuing People Refresh will address all the deficits. For example, many people with learning disabilities like going to their day centre or college. They relish the chance to learn more skills and enjoy a social life. Yet centres and courses are being closed down without people being offered the alternatives Valuing People envisaged.
It was assumed a push towards employment would increase the numbers in work, yet very few extra people with learning disabilities have managed to get a job. More are left sitting at home, bored and lonely, after having their budgets cut and raised the eligibility criteria for a service.
I was heartened by the learning disability national directors’ recognition that there is not enough money, but I remain to be convinced we have won that argument.
An area we know will be included in the Refresh is In-Control with individual budgets. These schemes needed to happen the take-up of direct payments (on which they are based) has been pathetic, despite all the money spent on implementation. Again, I see huge changes for some who are getting their own cash. But is this always going to be a minority activity? A recent Department of Health commitment means that each council will have their own strengthened centre for independent living (CILs). These have done some great work, but primarily with people with a physical disability. Very few support or work with people with learning disabilities most don’t know how to and indeed some are reluctant to. To move to services linked closely with CILs could prove disastrous for people with learning disabilities. We have seen some catastrophic mistakes when policy has been based upon what CILs said was needed, for instance the need to consent to a direct payment.
To achieve the Valuing People vision, we need more than a Refresh, and certainly more than the limited and misguided change that is being suggested. I believe we need more central control that places clearer expectations on authorities about the standards of service and support people with learning disabilities are entitled to. This flies in the face of the government’s direction, but we are going to need to do this to bring about real equality in service provision and to support the involvement of people with learning disabilities in our communities.
Finally we need to do much more about health. The reports on people with learning disabilities dying before their time are a national disgrace. Valuing People has achieved little on this and it needs to be far more than just a focus in the Refresh. It needs dedicated work to address the discrimination in health services that have brought shame upon everyone. Thank goodness for Community Care’s A Life Like Any Other campaign to bring this to the government’s attention.See Andrew Holman’s blog
This article appeared in the 6 September issue under the headline “Time for some added value”